A multi-component intervention to promote adolescent self-determination. (Take Charge Field Test).

Adolescence is typically a time for expanding personal independence and preparing for employment, post secondary education, and community living, as well as developing new relationships with peers and community members. Each of these activities is essential if adolescents are to assume their quickly emerging adult roles, responsibilities, and privileges (Larson & Kleiber, 1993).

Adolescents with physical disabilities and ongoing health conditions often experience cognitive and physical challenges that impede their independence and preparation for adulthood. Barriers may include limitations in strength, vision, hearing, mobility, dexterity, endurance, communication, and cognition. Some adolescents face health instability, requiting on-going medical care and exposure to procedures that can be uncomfortable and incapacitating. To obtain assistance with personal care and daily activities, adolescents with disabilities often use help provided by others and typically, they are passive recipients of such support. The prevalence of architectural and communication barriers further exacerbates the dependence of adolescents with disabilities as do negative attitudes regarding their worth and potential for achievement.

Some progress has been realized in efforts to enhance the independence, achievement and transition success of adolescents who experience disabilities (Powers, Deshler, Jones, Simon, & Taylor, in press). However, despite these advances, adolescents with significant disabilities and health conditions, such as cerebral palsy, cognitive disability and cystic fibrosis, continue to experience poor outcomes in employment, postsecondary education, and independent living (Blackorby & Wagner, 1996; Valdes, Williamson, & Wagner, 1990). Many adolescents lack opportunities to learn accommodation strategies and participate in empowering experiences that will promote their self-competence and normative achievement.

Most approaches to promote the capabilities of adolescents with disabilities have focused on demonstrating strategies that professionals and parents can use to assist adolescents to become more independent. Only in the last decade has our attention begun to shift toward assisting adolescents to learn self-help strategies that promote their self-competence and functional capabilities. Some of this work has been accomplished through federally-funded initiatives to identify and demonstrate strategies that promote the self-determination of adolescents with disabilities (see Ward & Kohler, 1996 for an overview of practices developed through these projects). Self-determination refers to personal attitudes and abilities that facilitate an individual's desire for and pursuit of goals. The expression of self-determination is reflected in attitudes of empowerment and self-directed action to achieve personally valued goals (Powers, Wilson, Matuszewski, Phillips, Rein, Schumacher, & Gensert, 1996). Several self-determination models have been developed (e.g., Field & Hoffman, 1996; Martin & Huber-Marshall, 1998; Wehmeyer, 1998). Although program evaluation findings highlight the effectiveness of these models, they typically have not been subjected to controlled study.

This article describes a field-test of TAKE CHARGE, a multi-component self-determination model (Powers, Sowers, Turner, Nesbitt, Knowles, & Ellison, 1996). Mastery motivation and self-efficacy provide the conceptual foundation for the model. Mastery motivation is characterized by perceived competence, self-esteem, maintenance of an internal locus of control, and internalization of goals and rewards (Harter, 1981). It is achieved through repeated attempts paired with reinforcement for successes. Self-efficacy refers to persons' beliefs that they have the capacity to demonstrate a desired behavior in a specific context, and, if they do, a particular outcome will result (Bandura, 1986). Self-efficacy appraisals are impacted by (a) performance accomplishments, (b) vicarious learning from role models, (c) social persuasion provided by family, peers and educators, and (d) physiologic feedback mediated through the use of self-regulation strategies. Key to the promotion of self-efficacy is maximizing adolescents' self-attribution of competence. Evidence suggests that self-efficacy beliefs are an important predictor of academic success (Graham & Harris, 1989), motivation (Schunk, 1989), and functional well-being (Dolce, 1987).

Designed to bolster sources of mastery motivation and self-efficacy, the TAKE CHARGE model includes (a) coaching for adolescents in the application of self-determination skills to achieve their personal goals, (b) mentorship experiences for adolescents, and (c) information and support to assist parents to promote the achievement and positive self-attributions of their sons and daughters (Powers, Sowers, Turner, et al. 1996; Powers, Wilson, et al., 1996). The model is designed to be collaboratively implemented by schools and community organizations, independent living centers and family support programs. TAKE CHARGE has as its centerpiece adolescent-directed participation in personally-relevant activities in school, community, and home settings. Adolescents learn that they are responsible for promoting their own independence and self-confidence. They are coached in specific strategies to identify and achieve their personal goals. The purpose of this study was to conduct an exploratory, experimental evaluation of the impact of the TAKE CHARGE model on the adjustment of adolescents with physical disabilities and ongoing health conditions. The following hypotheses were investigated:

1. Adolescents who participated in TAKE CHARGE would demonstrate significant enhancement in psychosocial adjustment compared to adolescents in a wait list comparison group.

2. Adolescents who participated in TAKE CHARGE would demonstrate significant enhancement in disability-related self-efficacy compared to adolescents in a wait list comparison group.

3. Adolescents who participated in TAKE CHARGE would demonstrate significant enhancement in empowerment compared to adolescents in a wait list comparison group.

4. Adolescents who participated in TAKE CHARGE would report significant enhancement in personal accomplishment compared to adolescents in a wait list comparison group.

Method

Participants

Twenty adolescents with physical disabilities and ongoing health conditions participated in the study. Educators in four schools in New Hampshire were asked to identify adolescents between the ages of 12 and 18 who experienced physical disabilities, ongoing health conditions, or both, that substantively impaired their functional performance. In addition, these adolescents received special education services. The educators contacted the adolescents and their parents to assess their initial interest in participating in the study. Contact information for interested adolescents and parents was provided to the researchers, who conducted home visits to further explain the study and obtain informed consent. The researchers explained that the adolescents and their parents would be randomly assigned to either a treatment group or a wait list group. The treatment group would participate in TAKE CHARGE immediately; the wait list group would be invited to participate in the following semester. One adolescent and his parent declined to participate in the study due to scheduling difficulties for the parent.

The study participants were 50% male and 50% female. Of the participants, 16 experienced mobility disabilities and 11 used wheelchairs; 10 had cerebral palsy, 3 experienced muscular dystrophy, 1 had arthogryposis, and 2 experienced spina bifida. Eight of the participants had educational classifications of mild mental retardation, documented by standardized intelligence test scores included in their school records. Three adolescents had primary conditions of cystic fibrosis, leukemia and tourettes syndrome. Three adolescents experienced epilepsy and diabetes in addition to cerebral palsy, mental retardation, or both. All but two adolescents experienced multiple disabilities or health conditions.

The mean age of the treatment group was 14 years while the mean age of the wait list group was 14.7 years. For both groups, the age range was 12 to 18 years. There were 6 females and 4 males in the treatment group and 4 females and 6 males in the wait list group. The Vineland Adaptive Behavior Scales, Interview Edition (1984) was administered to a parent of each participant. The mean composite adaptive behavior scores of the participants in the treatment and wait list group were 55.7 and 51.8, respectively; documenting the functional impairment of the participants in both groups. The mean composite adaptive behavior scores of the males in the treatment and wait list groups were 63.8 and 57.7, respectively. The mean composite adaptive behavior scores of the females in the treatment and wait list groups were 50.3 and 43.0, respectively. Thus, the scores for the males were higher than the scores for the females in both the treatment and wait list groups. Given that there were more males in the wait list group than in the treatment group, it is unlikely that treatment effects could be attributed to gender.

Dependent Measures

The following measures were administered to each participant pre-intervention and post-intervention:

The Personal Adjustment and Role Skills Scale (PARS III) was used to measure adolescent psycho-social adjustment (Walker, Stein, Perrin, & Jessop, 1990). This 28-item measure assesses the functioning of children in peer relations, dependency, hostility, productivity, anxiety-depression, and withdrawal. The measure is appropriate for adolescents with physical health problems because it does not include somatic items that might inflate their maladjustment score (Walker et al, 1990). Internal consistency coefficients range from .7 to .8 for the subscales and < .88 for the total score. Total scale scores on the PARS III demonstrate correlations ranging from .74 to .80 with the Child Behavior Checklist (Achenbach & Edelbrock, 1973) and correlations ranging from .76 to .80 with the Health Resources Inventory (Gesten, 1976). PARS III scores were calculated as the average of the adolescent's mean scores for each group.

Disability-related self-efficacy was measured with the Disability-Related Self-Efficacy Scale (Powers, Sowers & Stevens, 1995). This 8-item scale, developed for research purposes, measures the extent to which adolescents believe they have the capabilities to achieve desired outcomes made more difficult due to disability-related barriers. The scale includes items such as "When something I like to do is physically hard for me, I cannot do anything to make it easier"; I am good at getting help from others when I really need it"; and "If making friends seems like it will be hard for me because of my disability, I will not try". Initial analyses of the psychometric properties of the Disability-Related Self-Efficacy Scale yielded a standardized item alpha of .76 and a correlation of .50 with the Self-Efficacy Scale, a measure of general self-efficacy (Sherer, Maddox, Mercandante, Prentice-Dunn, Jacobs, & Rogers, 1982). Scores on the Disability-Related Self-Efficacy Scale have been shown to be significantly increased for adolescents with physical disabilities exposed to a mentorship intervention (Powers et al., 1995).

Adolescents empowerment was assessed with the Family Empowerment Scale, a 34-item measure. This measure asks respondents to indicate the extent to which they can manage (a) day-to-day situations, (b) the services they use, and (c) advocating on behalf of others (Koren, DeChillo, & Friesen, 1992). The measure demonstrates internal consistency coefficients from .88 to .89 and a consistent factor structure. Originally developed for parents of children with disabilities, the measure was modified to enable adolescents to indicate the extent to-which they could manage their own day-to-day circumstances, services, and advocate for other adolescents. Administration of the revised scale to 80 adolescents with disabilities participating in further evaluation trials of TAKE CHARGE yielded an acceptable standardized item alpha of .85.

An additional question was developed to assess the extent to which adolescents perceive they have accomplished activities in their lives. Level of personal accomplishment was assessed by asking participants to name all of their activity accomplishments for the three months prior to the intervention and the final three months of the intervention. The total number of accomplishments identified by each participant was summed for each time interval.

Procedure

A two-independent group, repeated measures, randomized block design was utilized to evaluate the impact of the intervention. Given the small number of study participants and the nature of the intervention, subject blocks were established for level of cognitive function, the variable we judged most likely to impact response to treatment. The participants were assigned to blocks based on their experience of mental retardation, then randomly assigned from each block to the treatment and wait list groups. This procedure ensured that there were equal numbers of adolescents with cognitive disability in each group. The use of such a blocking procedure provides an effective technique for controlling for the effect of intervening variables when attempting to evaluate the general efficacy of an intervention (Kazdin, 1992).

Subjects in the treatment group participated in TAKE CHARGE for 5 months. The intervention included four major elements: (a) individualized, 50-minute weekly coaching sessions for adolescents, (b) monthly community-based workshops for adolescents, their parents and successful adult mentors, (c) community activities performed by mentors and adolescents, and (d) telephone and home visit support for parents.

Weekly coaching was provided by three members of the research staff who were secondary special education teachers and guidance counselors trained in the TAKE CHARGE approach. Coaches assisted adolescents to review and apply strategies from the TAKE CHARGE self-help guide to identify and achieve three specific personal goals (Powers & Ellison, 1996). The strategies are presented in Figure 1. Adolescents were coached to dream about their futures, to identify short-term, activity-based goals that were important to them, to problem solve methods to overcome obstacles to goal achievement, and to prepare to carry out activities necessary for goal achievement. In conjunction with coaching in these achievement strategies, adolescents learned strategies to build partnerships with other people who could assist them to achieve their goals as well as self-regulation strategies. Following their identification of goals, adolescents participated in a planning meeting with their teachers and parent(s) in which they presented their goals and solicited encouragement and needed assistance.

Each strategy was presented as a series of simple steps. For example, the steps for problem solving are (a) identify the parts of an activity, (b) decide which parts may be hard for you, and (c) pick the easiest way to do each hard part. The coaches reviewed each strategy with the adolescents and assisted them to apply the steps to their goals. Treatment subjects participated in an average of 17.6 coaching sessions and worked toward goals, such as raise my grade in English class, make my home bathroom more accessible, independently use the public bus, eat lunch with friends in the school cafeteria, learn to use the library, attend class without an aide, make a meal for my family, lose five pounds, meet with my doctor alone, get my hair styled, and join the drama club.

Adolescents were also introduced to adult mentors with similar disabilities who lived independently, had an active vocation, and presented a positive view of disability, as evidenced through structured interview and reference checks. Mentors were matched to adolescents based on gender, interests, and similarity of challenge. Mentors were recruited from the local independent living center and area colleges and universities. All mentors participated in a 4-hour training during which the purpose and components of TAKE CHARGE, the role of mentors, and the study procedures were detailed. The training was conducted by the Mentorship Coordinator, a staff person from the independent living center who experienced a disability. Although participants in a study, mentors were encouraged to make their interactions with adolescents as naturalistic as possible. Mentors were coached to anticipate and take advantage of opportunities that would naturally arise during their interactions with adolescents in which they could demonstrate a behavior or provide some information. For example, during visits to the mentors' places of employment, the mentors could talk with the adolescents about job accommodation strategies.

Monthly, two-hour long workshops were conducted for adolescents, parents, and mentors at the independent living center. The workshops were co-facilitated by the Mentorship Coordinator and the Parent Support Coordinator, a staff person from a local parent-to-parent program who was the parent of a child with mobility and health disabilities. The adolescents and their parents selected the workshop topics that included: (a) living with a disability, (b) personal advocacy, (c) friendships and dating, and (d) jobs and careers. Each workshop was structured to enable adolescents, parents and mentors to discuss a specific topic together, and in small break-out groups. In the small groups, adolescents, parents, and mentors further discussed the topic and related issues. The workshops concluded with all participants coming back together to de-brief on the quality of the workshop and what they had learned. The mean number of workshops attended by adolescents was 3.7 (range 3 to 4). The mean number of workshops attended by parents was 3.5 (range 2 to 4).

Adolescents and their mentors also performed independent community activities related to the adolescent's goals and interests, such as riding the public bus; applying for vocational rehabilitation services; visiting the mentor's college, place of employment, or home; and participating in a novel recreational activity like skiing or skating. Written parental permission was obtained for all community activities performed by adolescents and mentors. The Mentorship Coordinator assisted adolescents and mentors to plan the logistics of their activities. The Mentorship Coordinator also provided pre-activity coaching to mentors to assist them in their preparation for each activity, in their anticipation of opportunities for modeling or providing information, and in their troubleshooting of problems that might arise. The mean number of community activities performed by adolescents and mentors was 3.5 (range 3 to 5 activities).

Besides participating in monthly workshops, parents were provided with additional information and support. A guide was given to each parent that described the TAKE CHARGE approach and presented some strategies that parents reported to be helpful in supporting the self-determination of their sons and daughters (Matuszewski & Powers, 1998). Coaches, who were working with the adolescents at school, provided parents with informational updates in three telephone calls. Each coach reviewed the adolescent's progress, talked with the parent about any progress he or she observed at home, solicited the parent's ideas regarding strategies to support the adolescent, and assisted the parent to problem-solve solutions to barriers in promoting his or her child's self-determination. The final form of parent contact was individualized family support provided by the Parent Support Coordinator. Individualized family support included phone calls and home visits to provide information about community resources, to encourage parents to think about their own futures and what they wanted for and from their children, and to offer emotional support during difficult times. The mean number of total phone contacts provided to parents was 5.1 (range 4 to 9 contacts). The mean number of home visits to parents was 2.2 (range 2 to 3 contacts). More intensive support was provided to assist one parent who became unemployed and another family who was evicted from their home during the intervention.

Procedures were utilized to monitor and promote treatment fidelity. On a weekly basis, each interventionist completed fidelity checklists that detailed the steps for implementing each treatment element.. Weekly meetings of the treatment team were also conducted to review the fidelity checklists and to identify key steps to be conducted in the coming week to ensure that treatment elements were consistently implemented with each participant. Analysis of completed fidelity checklists at the conclusion of the study revealed a 92% level of treatment implementation across the interventionists. Thus, although there were differences in the precise method of delivery of intervention elements in order to address the unique needs of each participant (e.g., coaching session made up due to illness, generic problem-solving steps applied to different goals, topic of individual discussions with parents varied), fidelity monitoring suggested that the key aspects of each intervention element were delivered to each participant.

Results

Analyses of variance for repeated measures (2 groups X 2 time periods) were utilized to evaluate the hypotheses. If the interaction was significant, univariate ANOVAs were used to verify the source of the effect. A .025 level of significance was utilized to evaluate the follow-up F-ratios.

The results are presented in Table 1. Three of the hypotheses were confirmed. Significant interactions between group and time were found for psycho-social adjustment, empowerment and level of adolescents accomplishment. Follow-up univariate analyses revealed that the effects were due to significant improvement in the scores of the treatment group from pre-test to post-test on psycho-social adjustment (F = 11.36, p = .01), empowerment (F = 14.91, p < .01), and level of accomplishment (F = 21.96, p = .01).

The remaining hypothesis, that adolescents who participated in TAKE CHARGE would demonstrate significant enhancement in disability-related self-efficacy, was not confirmed. As shown in Table 1., a significant interaction was not obtained and there was no main effect for group. Only a significant time effect was found, indicating that both groups demonstrated higher post-test scores than pretest scores.

Consistent with the experimental finding of enhanced level of accomplishment among adolescents in the treatment group, the coaches reported that 97% of the short-term activity goals identified by treatment group participants were achieved (29 of 30 goals achieved). One adolescents's goal, to find a summer job, was not achieved during the course of the study. However, the adolescent did find a job a month after the study concluded and worked that summer. Adolescents also experienced a number of related accomplishments in association with their achievement of targeted goals. For example, one young man's target goal was to make his home bathroom accessible. He identified a contractor, secured funding for the modifications from the local family support program and worked with his parents to re-design the bathroom space. After the bathroom was modified, this young man began to shower and dress independently. Recognizing his new capabilities, the young man's parents decreased their assistance and raised their expectations regarding other activities he could do. A second adolescent's goals were to ride the bus independently and to obtain a computer to do her school work. Her mentor accompanied her on initial bus trips and, by the end of treatment, she was traveling alone on the bus to several locations. She also wrote a letter to the local newspaper regarding the need for additional computers in the school. As a result, seven computers were donated to the school and two teenagers in the community offered their help in setting up her computer. Ongoing friendships developed among these adolescents. A final example of collateral impact is provided by a young man who's goal was to eat lunch with peers at school. Prior to his involvement in the study, this young man had eaten lunch with teachers. His mother was disappointed with this goal because she felt he should work on more important areas such as learning how to catheterize himself. However, once this adolescent began to eat with his peers and had voiding "accidents," he independently identified and achieved a follow-up goal to self-catheterize.

Discussion

The study provided general support for the efficacy of the TAKE CHARGE self- determination model. Findings suggest that participation in TAKE CHARGE is associated with enhancement in psycho-social function, in empowerment and in personal accomplishment. These findings are supported by clinical data that indicates participants in the treatment group achieved a high proportion of activity goals that they identified and worked on during the study. The findings did not confirm the impact of the intervention on adolescents" disability-related self-efficacy. There may be multiple reasons for this nonsignificant finding, including the treatment's lack of influence on disability-related self-efficacy, measurement problems or insufficient power due to the relatively small sample size of the study. Each of these factors will need to be considered in the design of subsequent research that examines the impact of TAKE CHARGE on disability-related self-efficacy. The results of this study should be interpreted cautiously. Although the research design that was utilized guards against most threats to internal validity, the sample size was small and, as such, vulnerable to inadequate randomization of factors which could have contributed to inequality of the groups. Clearly, additional controlled study with larger sample sizes is a requisite for the formulation of definitive conclusions regarding the efficacy of the TAKE CHARGE approach. The collection of additional follow-up data would also strengthen future research on the efficacy of the model.

A second limitation of the study is the lack of standardization of some of the dependent measures. The psychometric properties of the Disability-Related Self-Efficacy Scale are based on preliminary validation with a small sample of adolescents and require further examination. Likewise, the internal consistency coefficients for the revised Empowerment Scale used in this study are promising but will require further confirmation with additional samples of adolescents. The measure of adolescents accomplishment was specifically designed for use in this study. Although this practice is common in studies that examine emerging areas of investigation, it adds ambiguity to the interpretation of the findings.

A third major limitation of the study pertains to external validity concerns. The intervention was evaluated with a relatively low incidence population of adolescents with significant physical and health disabilities, some of whom also experienced cognitive disability. The impact of the intervention on adolescents with learning and emotional disabilities is unclear. Although program evaluation findings suggest that TAKE CHARGE is effective for adolescents with diverse disabilities and those without disabilities, further experimental research is necessary to unequivocally document this effect. A second concern relates to difficulty in generalizing the findings to different methods of model delivery. Although the coaching element of the intervention was delivered through individual instruction to bolster internal validity, our experience suggests that the model is most commonly implemented with small groups or classrooms of adolescents. Additional study is needed to investigate the efficacy of the model under these conditions.

Taken as a whole, the findings suggest that interventions such as TAKE CHARGE hold promise for enhancing the self-determination and life preparedness of adolescents with disabilities. Other approaches that focus on self-determination skill development, mentorship, or family support lend credibility to our findings which highlight the importance of these intervention elements (e.g., Field & Hoffman, 1996; Halpern, 1998; Wehmeyer, 1998). Perhaps the most important contribution of this study is its documentation of the impact of a multi-component, peer-based self-determination intervention that integrates coaching-based instruction, mentorship, and family support. Such an approach; which brings together schools and community organizations and which creates partnerships between educators, adolescents, mentors and parents; appears beneficial and may reflect the emergence of new models that could have the power to truly support adolescents with disabilities as they take charge of their lives.

Table 1. Means, Standard Deviations, and Interaction Effects.

                             Means and Standard Deviations

Test                      Group            Time

                                           Pre

                                       Mean      Sd.

Empowerment               Treatment    3.06     (.39)
                          Wait         3.61     (.45)

PARS III                  Treatment    2.89     (.37)
                          Wait         3.32     (.43)

Adolescent                Treatment    1.60    (1.35)
Accomplishment            Wait         1.50    (1.27)

Disability-Related        Treatment    2.85     (.45)
Self-Efficacy             Wait         2.94     (.45)

Test                      Group            Time

                                           Post

                                       Mean      Sd.

Empowerment               Treatment    3.82     (.57)
                          Wait         3.66     (.57)

PARS III                  Treatment    3.24     (.42)
                          Wait         3.14     (.22)

Adolescent                Treatment    5.70    (2.49)
Accomplishment            Wait         2.10    (1.29)

Disability-Related        Treatment    3.38     (.42)
Self-Efficacy             Wait         3.05     (.54)

Test                      Group       Test for Interaction
                                        (Time by group)

                                        f      p-value

Empowerment               Treatment    8.44     < .01
                          Wait

PARS III                  Treatment   13.40     < .01
                          Wait

Adolescent                Treatment   12.35     < .01
Accomplishment            Wait

Disability-Related        Treatment    2.85     < .11
Self-Efficacy             Wait
Figure 1. Generic Strategies in TAKE CHARGE.

ACHIEVEMENT     PARTNERSHIP         COPING

DREAM           SCHMOOZE       THINK POSITIVE

SET GOALS       BE ASSERTIVE   FOCUS ON ACCOMPLISHMENTS

PROBLEM-SOLVE   NEGOTIATE      MANAGE FRUSTRATION

PREPARE         MANAGE HELP    TRACK AND

DO IT!                         REWARD PROGRESS

Acknowledgement

This study was funded, in part, by grant #H158KK2006 awarded by the US Department of Education, Office of Special Education and Rehabilitative Services (OSERS). The opinions expressed herein are exclusively those of the authors and no official endorsement by OSERS should be inferred.

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Laurie E. Powers
Alison Turner
Oregon Health Sciences University

Robin Ellison
Dartmouth Medical School

Jeanne Matuszewski
New Hampshire Parent to Parent

Roxanne Wilson
Southeast Region Education Service Center

Amy Phillips
Granite State Independent Living Foundation

Claudia Rein
Pembroke Academy

Dr. Laurie Powers, Co-Director, Center on Self-Determination, Oregon Health Sciences University, 3608 SE Powell Blvd., Portland, OR 97202-1880. Email: [e-mail].